Category Archives: Life with Maddie

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We truly look forward to this event EVERY year, ALL of us. For Arnie to give up his birthday willingly says a lot about how much it means to us.

To start, Huskython is an 18 hour dance marathon run by UCONN students. All proceeds go directly to the CT Children’s Medical Center. The event is held on campus at the Field House. It starts at 6pm and goes until 12:00PM the next day.

This year we had to get a bit creative, as Maddie had a basketball game in Southington at 3pm and we had to be at the Family Dinner in Storrs by 4PM. Arnie took Maddie to basketball and met us up on campus after. Olivia and I checked into the hotel early (www.nathanhaleinn.com). She was a bit bummed that the pool was being refurbished. Once I pulled out Netflix on the laptop, there was no more complaining.

Prior to arrival, we were presented with a schedule of events for the entire 18 hours PLUS a list of the themes for each hour of the dance a thon. The themes included Husky Pride, and Disney among others. Olivia LOVES to dress up, so we packed her outfits for all the hours we could possibly be there for. At this point we can make it until 11PM before heading back tot he hotel.

Olivia and I packed her bag and walked to the Student Union, where the family dinner was held. This was a big improvement in location over past years as we could walk from the hotel AND it was directly across the street from the Field House. We didn’t feel rushed and the timing of dinner vs when we had to be across the street was perfect.

They lined us up to go across the street in a particular order. Katie P, UCONN Student, Delta Gamma member, and Family Relations Director for Huskython walked us over. Olivia was first and held Katie’s hand. The family entrance into the Field House was THE BEST in the 4 years we’ve been attending. I thought my heart would burst from all the love we felt walking in there. I don’t want it to seem that we didn’t appreciate every other entrance, just that this year’s was unreal. I don’t know how they can top it, short of fireworks HA! I will add a video shortly, but they had 1700 students creating a pathway for us to walk in the field house. They opened the door, and it was pandemonium. Students SCREAMING, pep band playing, DJ playing music and the emcee announcing each child. It was EVERYTHING I could do not to cry. I cannot imagine how overwhelming it was for Liv. All the families were in tears after the entrance.

New this year was a “Fast Pass” which was a great touch. The kids were given a “fast pass” to skip ANY line at any time. So no waiting an hour for the bounce house, or even FOOD! They really made sure the kids felt like celebrities.

We are truly blessed to be matched with Delta Gamma every year. Not only do they shower Olivia with gifts, but they ALWAYS remember Maddie. The girls were super excited to get all their gifts, but the most special item for both was a sailor hat with their names on it. This is something Delta Gamma does for their “sisters” once they become members of the sorority, so it was a very special gift we will treasure forever. Arnie and I have been laughing that Olivia is going to walk into that sorority house in 10 years and say “I’m here, where do I put my stuff?”. She truly believes she’s a DG girl :).

I say this every year and every year I forget. It gets SO HOT in the field house and we really need to remember to lay the clothing and bring capri’s / shorts for the kids.

During every hour a family would share their story about CT Children’s Medical Center. New this year, the students would get down on one knee to honor the family and show respect. It was VERY moving to see them all like that. Olivia spoke during the 17th hour of the event. She was a bit nervous, but there were 1700 people kneeling there, listening to her. She did a great job and I was so proud of her.

The students ended up raising over $304,000 for the hospital. This is now the second biggest fundraiser the Medical Center has and it’s now in the top 10 for dance marathons for Children’s Miracle Network Hospitals.

We cannot WAIT for Huskython 2013.

Published April 10, 2012, but backdated to February 19, 2012 for historical purposes

I’m promising to update more frequently. We have a LOT going on and I want to document it all for when I ever get a chance to scrapbook

June was a busy month.

Maddie graduated from St. Dominic School on June 15th. It was a beautiful day and I’ll admit to having shed a few (thousand) tears.

June 17 was a VERY big evening for Olivia. We were invited to the Aqua Turf to share Olivia’s story at the Miss CT Gala. This is the kickoff to the Miss CT pageant. Maddie had her annual end of school party at Mountain Grove which she chose to attend instead. Olivia was in her GLORY with all the pretty ladies, their gorgeous dresses and of course, all those CROWNS! Olivia made us incredibly proud when she chose to give a speech herself. There was not a dry eye in the room when she was finished and she received a standing ovation. The directors of the pageant were so impressed they actually made Olivia an honorary “diamond” and gave her a crown. It was truly a shining moment for Olivia and “the hands” were going a mile a minute. She asked me after getting her crown if she would get a sash too? LOL. She then spent the rest of the evening dancing with the other girls. She made fast friends with a little girl who had the same dress on as her.

This was such good timing, as the next morning I woke up Maddie and took her to Disney as her graduation present! It was just the two of us. We went from June 18 – June 22 and stayed at the Port Orleans – French Quarter. How I told her: I had been telling her we were going to start getting up early in the morning and running. We had also been telling her that her graduation gift wouldn’t be arriving until Saturday. On that morning I woke her up at 5AM and asked her to come downstairs. We handed her a graduation card that told her to look in the trunk of my car for her gift. She opened the trunk where two suitcases were in there (with the bright yellow Magical Express luggage tags on them), along with her Mickey ears and a small Mickey Mouse. She couldn’t believe it and kept saying “Really? Now?”

Maddie actually planned the entire trip – from dining to park days for my “client”. We did a lot of “new to us” things – such as water parks (which she had last been to at the age of 3), Disney Quest and closing the Magic Kingdom at 2AM. It was a great time for just the two of us to spend time together and bond.

June 25 I took the girls and Maddie’s best friend to the Miss CT pageant in New London. The Miss CT organization had invited us to attend after Olivia’s speech. Olivia got to see some of the new friends again and we got to see Miss Southington, Morgan Amarone, become Miss CT. Olivia went on stage with our friend, Scott, from the CT Children’s Medical Center Foundation to help him present the outgoing Miss CT, Brittany Decker, with a thank you for all that she did for the Hospital in the past year.

We took Maddie to see Dr. Heller on September 7. Maddie was VERY nervous about going. I can’t say I blame her – knowing what her sister’s been through.

This appointment was a way for us to confirm there’s nothing wrong with Maddie’s heart. I was a bit concerned after hearing aboutÂ all these children who were dropping dead of undetected heart defects.

Maddie has a PERFECT heart! (Thank you GOD!).Â She weighs 41 lbs and is 43″ tall.Â Her oxygen sat was 99% and her blood pressure was 94/60.

Dr. Heller did an EKG and an echocardiogram on Maddie. We had to convince her the EKG wouldn’t hurt and once she had a sticker on her that didn’t hurt, she was good to go.Â Her “favorite” part was the “jelly on the belly” as we called the echo.Â I actually had a hard time understanding Maddie’s heart since I’m so used to Olivia’s.

Today Maddie’s class did a presentation at school about “Flag Day”.Â Each kindergartener had to talk about one word in the Pledge of Allegiance. Maddie’s word was “United”. She said “United: that means that we have all come together”.
She did a GREAT job and spoke so clearly into the microphone!Â I was so proud of her.Â After the presentation they had their monthly assembly where they hand out awards.Â Maddie received an award for Excellence in Art. And Christopher received an award for being a Good Christian.

On Sunday we took Maddie to see the Lion King at the Bushnell. This was the broadway production. It was an AMAZING show and at 2 hours and 45 minutes a bit long. But Maddie thoroughly enjoyed it !

The show did make her ask a lot of questions. We had to explain what happened to young Simba and young Nala when they “grew up” (older actors took over the roles). And she wanted to know if Simba’s daddy had *really* died. She felt better knowing it was all pretend. She watches mostly cartoons and very little live action shows.